Chronic Fatigue Syndrome
By David Tuller, DrPH The US Centers for Disease Control held one of its occasional briefings for ME/CFS stakeholders last week. I was unfortunately busy during that time, but #MEAction has posted a useful account of what was discussed, which you can read here. The #MEAction account includes short, helpful descriptions of a number […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) appears to have performed a partial U-turn after disabled campaigners reacted angrily to an apparent ban on media requests from Disability News Service (DNS). Last week, DNS reported how DWP’s press office had failed to provide a meaningful response […]
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 Dr Charles Shepherd, Hon. Medical Adviser, ME Association. Each year we fully update the ME Association information and guidance on flu vaccination in relation to ME/CFS. We hope to publish the free 2020-2021 leaflet by early October – once flu vaccination programmes begin, and we have all the relevant information about the new vaccine. […]
By Caroline Elizabeth in the Frozen Amber Blog. Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly […]
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 […]
By Ronald G. Tompkins, MD, ScD Co-Director, The Harvard ME/CFS Collaboration in Open Medicine Foundation. In May, 2020, Open Medicine Foundation (OMF) announced the Mestinon Clinical Trial for ME / CFS, conducted at the Brigham & Women’s Hospital by Dr. David Systrom in association with the Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals. Background This study was […]
By Simon McGrath in ME/CFS Research Review. Large numbers of people, around one in 10, don’t make a normal recovery from coronavirus but continue to be ill with “long covid”. The illness is likely to have several different causes, probably including ME/CFS. Post-exertional malaise appears to be a common symptom. Long covid patients have […]
By Jeff Wood in Health Rising. Jeff Wood’s remarkable recovery from severe ME/CFS following spinal surgery to correct craniocervical instability (CCI) and other problems shocked the ME/CFS community. It’s safe to say that almost no one saw that coming. Since then, others, including Jen Brea and Julie Rehmeyer, have been diagnosed and undergone […]
By John Pring in Disability News Service. Two disabled peers have called on the health and social care secretary to scrap powers given to local authorities that allow them to suspend some of their social care duties during the coronavirus pandemic. Crossbench peers Baroness [Jane] Campbell and Baroness [Tanni] Grey-Thompson have written to […]
From Independent Living. If you are a Blue Badge holder, and you have been struggling to find an unoccupied disabled parking bay, it is probably not surprising. According to data obtained from Freedom of Information requests made by confused.com, there are 38 badge holders per parking space… Since the welcome extension of Blue […]
By Cort Johnson in Health Rising. The exercise physiologists at the Workwell Foundation are pretty darn good at providing thought provoking case reports. A couple of years ago, a Workwell case report indicated that a very ill ME/CFS patient was able, using Workwell’s heart rate-based exercise program, to not just halt the steady decline […]
By David Tuller, DrPH It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them. We […]
By David J. Craig in Columbia Magazine. Physicians have seen it before: in the aftermath of a viral epidemic, survivors complain of a crushing lethargy, mental fogginess, sleep difficulty, and muscle pain. Many are eventually diagnosed with myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), a poorly understood condition that has no FDA-approved treatment and […]
STICK WITH IT….. In life we like to fit right in To mix in with the crowd Not to shout, not stand out Not to be too loud But sometimes things just come along That force us into change I’m talking Chronic Illness Making life so strange When M.E. hits, it hits you […]
From Yahoo! News. There is no end to the coronavirus pandemic in sight yet and the world is already staring at another health crisis: the Covid-19 aftermath. They call it the “post-Covid syndrome”. Post-Covid-19 analysis by top American scientific bodies the National Center for Biotechnology Information and the Centers for Disease Control and […]
By Paris Ali-Pilling inThe Star and Crescent. Paris Ali-Pilling talks to Sally Callow in a two part series. In part one, Sally explains about the impact of the pandemic on her social enterprise. Sally is the founder of Stripy Lightbulb CIC and ME Foggy Dog, which offer training and aim to raise awareness about M.E/C.F.S. Interview transcribed by […]
By Mark Lavery in the Yorkshire Evening Post. A disabled activist from Leeds who suffers from a chronic pain condition is campaigning against major changes to the way patients like them are treated. Saba Mir, 28, of Woodhouse – who is non-binary – has suffered from ME for two years and is in severe and […]
By Sue Green in The Sydney Morning Herald. It would be utterly perverse to say I’m glad COVID-19 leaves some sufferers with long-term symptoms, including crippling fatigue. I wouldn’t wish that on anyone. But as one who has coped with that very thing along with chronic pain for more than a decade, I […]
By Cort Johnson in Health Rising. The two Dutch researchers, C. Linda van Campen and Frans Visser, and Peter Rowe from the U.S., have been on a tear recently. The Van Campen/Visser team (mostly with Peter Rowe) have published 6 ME/CFS studies thus far in 2020, one in 2019 and three in 2018. This […]
By Eddie Ngaluafe in Griffith News. Griffith University research has calculated the cost of the debilitating illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at $14.5 billion each year in Australia. Professor Sonya Marshall-Gradisnik, co-director of the National Centre for Neuroimmunology and Emerging Diseases (NCNED), says the figure shows the significant economic toll on patients and the broader […]
By Cort Johnson in Health Rising. Every once in a while a study comes along for which terms like “seminal” or “groundbreaking” seems appropriate. The 2020 Van Campen/Rowe/Visser study, “Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: A quantitative, controlled study using Doppler […]
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 Fulford York, the details of your local PCSO are below, and he should be contacted in the first instance. If he is not on duty, you may be dealt with by whoever is on duty. If you live in other areas of York, ring 101 and ask for the PCSO covering your area. In all cases, you will be required to give as much information about the vehicle and location as possible. You will NOT need to stay by the vehicle till the police arrive.
Simon Hall
PCSO 5648
North NPT
NORTH YORKSHIRE POLICE
Dial 101, press option 2 and ask for him by his full name or collar number
If using his collar number please state each number individually
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.
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.
