From The ME Association. A highly influential UK campaign group is demanding that a health warning be put on the existing NICE guideline for ME/CFS – to try and stop more patients being damaged by graded exercise. Some 24 members of the Forward-ME Group – led by founder The Countess of Mar – have signed […]
From A Life Hidden Blog by Naomi Whittingham. I see him in the hushed beauty of a winter sky; in the gold-streaked clouds of an expectant dawn. I feel his presence in music and candlelight. He is never fully here, yet with me always. Unknown to much of the world, yet a constant in my […]
By Cort Johnson in Health Rising. As time has gone on, the energy production issue in chronic fatigue syndrome (ME/CFS) has become better and better documented as researchers take different slants on it. Take the whole body energy production tests. Workwell’s two day cardiopulmonary exercise tests (CPETs) have documented the damaging effects that exercise one day […]
By Megan E. Doherty in elemental. Covid-19 is new, but the ME/CFS community has dealt with long-haul-like symptoms for years. Here’s how they cope. Asthe pandemic has progressed, it has become clear that a good chunk of Covid-19 patients suffer symptoms for weeks, even months, after first getting sick. Many of them deal with fatigue, muscle and […]
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 David Tuller, DrPH Earlier this week, I blogged about a story in The Observer that provided an inaccurate description of what it called chronic fatigue syndrome. For much of the piece, the writer, Eleanor Morgan, offered a sympathetic portrait of people, including herself, experiencing prolonged symptoms after an acute bout of Covid-19. A lot of what […]
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 Toshimori Kitami et al in Nature. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options. To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and fecal microbiome analysis. […]
From Living Streets. Caroline lives in a seaside town in England and is a member of one of our Local Groups of volunteers. As a wheelchair user, Caroline is passionate about improving streets and the access to them for everyone. In normal times, Caroline’s favourite things are being with friends, volunteering and seeing the […]
By Cort Johnson in Health Rising. Question: When does a graded exercise study explain why graded exercise is not helpful for chronic fatigue syndrome (ME/CFS)? Answer: when it employs an exercise test with it. Just as NICE was pulling back on graded exercise therapy (GET) a GET study was published showing why it doesn’t work. The authors […]
From BMJ Opinion. “Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this […]
By Linda Geddes in The Guardian. Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, […]
LIVING LIFE ‘LIGHT’ WITH M.E. When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight […]
From the ME/CFS Clinician Coalition USA. “Striking the right balance between activity and rest is one of the most difficult aspects of coming to terms with M.E. On one hand is the need to take an appropriate amount of rest and relaxation, especially during the very early stages, as well as during periods of […]
By Cort Johnson in Health Rising. This blog is one of a continuing series of blogs that are attempting to peer into the future and see what treatments possibly await us. This blog provides an overview on CoQ10 – what forms work best and how to take it – and then takes a look at […]
By Brian Hughes in The Science Bit. The newly released draft NICE guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” continue to cause a stir. And rightly so. The new guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — […]
Written by Di in Stanford Wood Studio. Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]
By Valerie Eliot Smith in Law and Health: due process and civil society. Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length. ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]
Despite NICE potentially dropping Graded Exercise Therapy as a treatment for ME, it’s still being suggested by GP’s to those with Long-Covid that they should exercise more as a way out of it. If your GP recommends exercise, please ignore, as it is very likely to make you worse.
By Gem Turner in WheelAir. At the time of posting this, it’s Disability History Month in the UK. It’s not very widely known – and when I talk about it, it gets a lot of questions from people. The main one is something like “it’s quite good for disabled people now though isn’t […]
By DAVID TULLER and STEVEN LUBET in Statnews.com. irrational fears they had an organic illness. The favored treatments were graded exercise therapy, designed to counter the deconditioning with a program of progressively increasing activity, a form of cognitive behavior therapy specifically designed to address the unfounded illness beliefs, or a combination of the two. In the […]
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 Jeremy Howick in The Conversation. Free vitamin D supplements will be sent to over two million clinically vulnerable people in England this winter. Over 80% of patients hospitalised with COVID-19 are vitamin D deficient compared with the general population. In a small study, a high dose of vitamin D appeared to reduce the severity of COVID-19. […]
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.
